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Silent Celiac glutened

pikakegirl

By pikakegirl
in Coping with Celiac Disease

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pikakegirl Enthusiast
pikakegirl
Posted

Ok, I have to get it together. After 11 years of militant gluten free eating, not eating out or eating processed food I glutened myself. I have not eaten chocolate since I was first diagnosed and this Halloween I caved. My memory failed me on what chocolate is gluten free. I should have looked it up. I know this is because I turned 50 and am feeling a bit hopeless lately. So I ate a bite size milky way, regular not dark. Then looked it up, duh. Anyway recently my new doctor asked what happens when I eat gluten and I said honestly I dont know it has been 11 years of normal blood work every 6 months and total normal villi on pill camera and colonoscopy. Well I had no symptoms at all confirming my Silent Celiac. Totally scary since I will never know when I am glutened. Back to my militant gluten free life. Just needed to confess since I am so dissapointed in myself.

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cyclinglady Grand Master
cyclinglady
Posted

As Forrest Gump said, “#&it happens!”.  One cheat might not set off a flare.  It also might take a few days.  Who knows?  Glad to hear the you are on the gluten-free wagon again.  Do not beat yourself up.  We are all human!  

  • 1 month later...
Blvr Rookie
Blvr
Posted

I feel nothing either when I eat gluten.  I do have diagnosed celiac disease and try very hard not to eat wheat, but do taste occasionally.  Does 99% good count?

GFinDC Veteran
GFinDC
Posted
45 minutes ago, Blvr said:

....  I do have diagnosed celiac disease and try very hard not to eat wheat, but do taste occasionally.  Does 99% good count?

No

cyclinglady Grand Master
cyclinglady
Posted
23 hours ago, Blvr said:

I feel nothing either when I eat gluten.  I do have diagnosed celiac disease and try very hard not to eat wheat, but do taste occasionally.  Does 99% good count?

While it is hard to remain gluten free, there are significant benefits for a celiac.  I personally remain gluten free because I do not want to develop anymore autoimmune disorders or cancer.  

I went in for a routine colonoscopy (yep, I am over 50).  During my GI consult, he suggested that I get tested for celiac disease based on my life-long bouts of anemia that was previously blamed on menstruation or Thalassemia (a genetic anemia I have).  (You can have more than one type of anemia.)   I was shocked.  I had no noticeable GI issues, but I was experiencing severe menopausal symptoms and thyroid swings.     Biopsies revealed some pretty severe damage.  Two months later, I fractured my back doing NOTHING.  I had unknowingly developed osteoporosis.  

What happened after I went Gluten Free?  About a year into the diet, my thyroid calmed down.  Really calmed down.  My nodules went away and it returned to a normal size.  I had the enlargement and nodules for almost 20 years.  Of course, I damaged my thyroid so much that I must remain on thyroid replacement forever.  I wish I had known earlier about my celiac disease and I could have prevented or reversed my Hashimoto’s.  

Bone scans have revealed at least some stability.  At my age it is hard to build bone, but I make exercise a priority in my life.  I eat a nutrient rich diet too.  I have not fractured anything else in five years.  

After healing the first year (iron-deficiency resolved so we assume healing), if I had a gluten exposure, I developed GI symptoms.  Even a tiny exposure I found can trigger not just my celiac disease, but my body’s desire to develop antibodies to other organs.   Celiac disease is like a chameleon and symptoms can wax and wane.  Because you can not tell if you are consuming gluten ask your doctor for follow-up blood testing and consider a repeat biopsy in another year or two.  

During my gluten free journey, I have learned to do things that do not involve food.  After all, food seems to be the majority of the nation’s current health issues.  Did you ever recall seeing so many heavy kids or people in your lifetime (your previous posting indicate you are a baby boomer like me)?  I now walk with friends instead of meeting for lunch.  I joined an orchestra (you can not eat while playing an instrument).  I take and teach classes too.  

Please consider doing your best to remain gluten free.  It really does become a new way of life.  Feeling good at any age is goal everyone should try to achieve.  

I wish you well.  

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